Q&As

Community Roundup: What’s The One Thing People Should Know About Chronic Illness?

We asked Folks' social media followers what the one thing they need others to understand about their experience. Here's what they told us.

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It’s hard to understand the experience of chronic illness if you’re not chronically ill yourself. So when the topic comes up in conversations, even well-meaning people can end up being insensitive at best, and offensive at worst.

That’s why, for this week’s Community Round-Up, we asked Folks’ social media followers: What’s the one thing you want others to understand about living with a chronic condition?

Amy Nicewicz

Amy Nicewicz:

I want you to know that every day is a battle. I may pretend that I am alright when I am not because I do not want to burden you. I need you to be there for me because some days I don’t know how much more I can fight. I want to be around you but some days I do not feel well and need to rest. The appointments with doctors and specialists never end. Life is not easy. Fighting illness can feel lonely. I need your understanding and your time. I need you to stay by my side and never leave me behind.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Rhiann Johns:

Rhiann Johns

I suppose if I could choose one thing that I wish people could understand about living with a chronic condition is that appearances can be deceptive; you can’t judge a book by it’s cover.

I can have a smile on my face but still be overwhelmed by numerous symptoms. Very often, a smile is a mask that I wear to let others know that I am OK when in reality I am feeling anything other than fine. I can be bothered by pain, fatigue, dizziness and weakness throughout my lower limbs but still the mask I wear stays on, hiding the physical and emotional effects that my body has on me. It’s a smile that conceals so much.

On my face I can wear make-up and look carefree, healthy and ‘normal.’ The truth is that it conceals the very dark circles beneath my eyes from the extreme exhaustion after endless nights battling insomnia caused by intense pain in my legs. A light foundation and blush that gives me a healthy, natural glow that hides my true pale, and sickly looking complexion. I wish that people would not judge based solely on what is in front of them. To dig deeper and see our true selves: the truth that we often try so hard to hide but is there if others look hard enough.
Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Jed Finley:

Jed Finley

Our conditions are chronic, meaning life long and incurable. We understand people mean well and want to help, but to those who want to share with us diet, exercise, herbal, and other lifestyle treatments, believe us when we say: we’ve probably considered and/or tried it. Yoga is great for you, but for me it hurts. I have so many dietary issues it would make your head spin. Suggesting your latest diet fad might not take into account what I can and cant have. Fish is supposed to be amazing for me! I’m allergic to fish. You want to know the best way to help us? Stop suggesting and start asking. Take time to learn more about your chronic illness friends before you start throwing out get well quick schemes. We love your time and support. That’s what will help us the most.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Sonya Huber:

Sonya Huber

The one thing I wish people knew about living with a chronic condition is that invisible really does mean invisible. Many people have an irrational impression that they can “tell” who looks sick and who looks well, or that a disability should be visible on the body. The constant surprise I face–and the “but you don’t look sick” comments–are meant to encourage, but after day after day of hearing them I get the impression that my daily experience is not believed by people who mean to be supportive. Being complimented for passing as non-disabled ends up being such a sad experience for me, because it implies that disability is a category I should be happy to avoid.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Eric N. Valor:

Erin N. Valor

The reality of living with a chronic condition is that it can be extremely isolating. Whether it be pain, skin conditions, neurological issues, etc., people with chronic conditions often cannot engage in social engagements and/or may be quite volatile in mood due to their condition. It’s not that they are hostile or anti-social. Chronic conditions are extremely frustrating. Patience from others is necessary and appreciated.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

 

Claudia Merandi:

Claudia Merandi

My reality is: I have a chronic illness, not a curse. There’s strong medications and pain associated with my Illness. It’s a burden on friendships, on intimacy, on work, but it’s my reality of living with a chronic illness. How you cope is how you get through living with a chronic illness. We all cope differently. Finding your coping mechanism is key.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.


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Creative Commons photo by tamckile